Exposing and Reimagining Data Ecosystems for Empowered and Effective Choices

This project seeks to support communities to make empowered and effective choices about healthcare by examining the place of data in evolving understandings of health, privacy and autonomy using foresight and speculative design. Working with communities, it will use foresight methods to develop alternate future data ecosystems and build data visualisation tools that demonstrate different means of engaging with data, sparking debate and promoting community agency over technological development. It will draw on a number of disciplines, such as foresight, design anthropology, service design and interaction design. One key foresight method will be the 'Manoa method' developed to support groups exploring 2nd and 3rd order impacts of innovations and the intersections of technical political and social change. This will be supported by Causal Layered Analysis, which has been developed into a series of practical tools. The user research into current methods of data collection will happen in 2 parallel streams, one focusing on people with health problems, while the other will be in 'care networks' and will include representatives selected from the loved ones and carers of those with health problems and wider formal and informal support networks. Information from both streams will inform one another to develop a series of alternate data scenarios, which reflect grassroots community interests, but are informed by the practicalities of care provision.